The “D” word.

My best friend has Type 1 Diabetes (T1D). She’s had it as long as I’ve known her. To be honest, I didn’t ever really think about it. I knew she had, she would go the bathroom after eating or give herself insulin at the table. It was NEVER a problem. It was NEVER an inconvenience. It NEVER changed our plans. She took care of it. End of story.

Then a couple of months ago – my five year old daughter starting sleep walking, she tried to go to the bathroom in random places – like by our bed, “in” her vanity chair and by the stairs. I honestly thought, “It’s a phase – it will end soon.” Then she stayed at my mother-in-laws and she said Diva got up and went to the bathroom 4 times in the night. Again – I thought it’s just a phase. No worries. But it didn’t end, and she started planning what she was going to drink for the night. I will never forget picking the kids up from school and on the way home Diva said, “When we get home I’m going to have strawberry milk, then juice, then water.” What?! What 5 year old plans what they are drinking when they get home – let alone 3 drinks?

So one Friday during FAW (Friday After Work) – more to come about that later – I was talking about it. One of the mom’s said – “Sheila take her in. I doubted it too – just take her in.” This mom has a teenage daughter that was diagnosed with Type 1 diabetes just a year ago.

So Monday rolled around, I called the doctor and made an appointment. We went in and they tested her urine. As the doctor was playing with my daughter he turned and said, “Unfortunately, there is sugar in her urine. This typically means diabetes, but can also mean kidney problems.” We will take blood and see what comes back. Go grab a bite to eat and come back in an hour or so. I talked to my mother-in-law and then my husband. I was scared. I was worried terrified. My sister-in-law drove my husband down to meet us – so we didn’t have two cars, but truthfully it’s because she was concerned he was too upset to drive. Diva and I had a great lunch at Noodles and Company – one of our absolute favorites (because they have gluten free noodles). Then we went back to the doctor. We heard the words that changed our lives forever. “Your daughter’s blood sugar is 385, she has diabetes.” No parent should ever have to hear that. From that time on our life has been complete chaos completely different.

The next morning we were sitting with the specialist at 7:30 am. We spent hours learning about diabetes and what we had to do to keep our daughter healthy alive. It was simply the worst day of my life. I had to poke my daughter’s finger and give her an injection. It took two people to hold her down while I did it. I felt like the worst most horrible mother in the world. I cried for a long time. How could I do this to my daughter several times a day, every day? When it was finished, she kicked me, she hit me and I didn’t blame her. I just held her and cried. My husband cried. My mother-in-law cried. Truthfully, I’m crying typing this. You cannot imagine the emotions you go through.

1. Blame and Guilt. I know it’s ridiculous and the doctor’s tell you a hundred times that it’s nothing you did. It’s nothing she did. It just happens. They don’t know why yet. It just is. But you can’t help but think, what if… Then the doctor’s tell you again - Type 1 Diabetes cannot be prevented and it is not curable. Hopefully someday they will know why and they will be able to prevent and/or cure it.

2. Sorrow. The weird thing about sorrow is the range it spans. I am sad that she will never have a “normal” life. I am sad that her fingers are going to get callused from all the finger pokes. I’m sorry that she has to get at least 4 injections a day. It makes me sad that she always has to have supplies with her. 24/7. And it makes me sad that people don’t understand T1D.

3. Fear. This is a BIG one. I am constantly thinking of her numbers – I am so scarred that she is going to have a low. (Low blood sugars can lead to a coma or even death) I’ve never been one to be able to fall asleep quickly. Now it’s even worse. I can’t help but think what happens if she dips low while we are sleeping and I don’t know it?! I’m scared of her rebelling when she’s older and not taking care of it properly. Basically, I’m just scared of everything when it comes to T1D.

4. Frustration/Mad. Frustration is a daily feeling. I get frustrated when we are doing everything by the book and she still gets a low or high (blood sugars). I get frustrated when she is high and is crying, screaming and throwing a fit about something ridiculous. And the frustration with the health care system and insurance is the biggest. It is ridiculous what they charge for test strips to test blood sugars simply because they know we have to have them. I’m mad that my daughter has to deal with this and I’m mad that she has to deal with it at such a young age.

5. Happy. Ok – happy seems really weird especially given the other four emotions. But it’s true. I’m happy that I KNOW what is going on with her body. I’m happy that I live in the time that I do – and that insulin exists and I can get it. I’m happy that with proper management she can have a very “normal” life.

As the days go on, it gets “easier”. The school and all the staff have been AMAZING and I can’t thank them enough. The school nurse has made sending Diva to school not scary. She knows what to watch for. She checks her blood sugar before lunch, before snack and any other time Diva doesn’t feel the best. She sends me a text each time to let me know where her numbers are and if she isn’t sure about something she calls. She is so good that when we are at home Diva will occasionally request the school nurse give her the insulin. I then have to explain we are at home and she has to pick one of us there! The school is making everything go so smoothly and I know they will take the best care of Diva.

We are very lucky to have a lot of family close by. My in-laws live just a mile up the road from us and have been lifesavers! My mother-in-law has been to all the appointments with us and has helped me with every little detail while my husband was in the field. My husband’s sisters and their families also live close and have all been so supportive. Lots of thanks to all the Diva’s cousins who have made it “cool” and held her hand, watched or gave her a high five when she’s done getting an insulin injection or getting her finger poked for a blood sugar test.

(The first picture shows some of her supplies for the day: 4 insulin injections. At least 6 pokes for blood sugar testing, ketone strips and a juice in case of a low. The other picture shows Diva with a Frozen bag that was made for her by a really sweet couple in Jewell to hold her supplies. She loves the bag – it makes it easy for her to have her stuff with her 24/7.)

It’s amazing how your life can change in a matter of seconds. It’s amazing how different you see things and people. To my bestie with T1D – I’m sorry if I wasn’t compassionate enough. I’m sorry that I didn’t really understand your disease and I’m sorry I didn’t understand how amazingly strong you are. Thank you for being an amazing friend and for helping me through the first few weeks of my daughter’s diagnosis.

So why blog about it? Writing it down helps me put everything into perspective. The T1D community is amazing. So many people have reached out and said – call me, text me, email me with any questions, concerns or frustrations. They have given gifts from food scales and measuring cups (which get used every time we are going to eat anything) to princess teddy bears and coloring books/activities. Every single gift has made Diva and me smile. I want to return the favor and help someone that just found out their child has T1D. I want to tell them it will be ok. You can do this. Yes – it is sad and it is frustrating but you have an entire community of people willing to help out anytime, anywhere.

XOXO

~ The Sheiliac